It does a good job of articulating a lot of issues, but I find it somewhat depressing and it certainly presents the worst case scenario. As a person with fibromyalgia who works full-time, volunteers, has a side business, and just started a non-profit, I can't get behind something that makes people with fibromyalgia sounds as if we're at death's door. Most people don't know i have fibromyalgia unless it comes up in the context of fund-raising for the non-profit. I have had people, when I tell them about the non-profit, look at me and honestly ask "Do YOU have fibromyalgia?"
I ride my bicycle (with motor) a couple of times a week, and just did my first week at the gym. That doesn't make me better than anyone else - it just means I've found ways to manage my pain and live well regardless of fibromyalgia. I still have bad days, and my doc is starting to give me shit about my breakthrough meds, but I refuse to "be" fibromyalgia - I'm just a person with fibromyalgia.
I guess part of my discomfort with the letter is that I don't really need anyone to speak for me. I know the science - I stay up on the
research - and for every misconception I will point you to the truth. So...I have mixed feelings...I guess it might help someone who is really struggling with the right words, but at the same time, I don't think it's going to change the mind of someone who really doesn't "get it."
Just another perspective - for what it's worth.
